Welcome Members!

Welcome to Living with Addisons Community!

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

Addison’s disease is a disorder that occurs when your body produces insufficient amounts of certain hormones produced by your adrenal glands. In Addison’s disease, your adrenal glands produce too little cortisol and often insufficient levels of aldosterone as well. One way the body keeps itself in balance is by using chemical messengers called hormones to regulate various functions. … In Addison’s disease, called primary adrenal insufficiency, the adrenal glands don’t make enough of a hormone called cortisol, or less often, a related hormone called aldosterone.

This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.

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How is Ben’s Friends Different from Social Media and Other Support Sites?

 

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together.. 

Ben’s Friends: Safe and Supportive. 
And anonymous to keep it that way.

 
 

Why create an account?

 

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join.

 

Latest Discussions

  • About the Caregivers category
    by ModSupport on October 14, 2021

    Anyone whose life has been touched by a rare disease is welcome in a Ben’s Friends community. Most of our members are patients, but we have spouses and parents, besties and caregivers here as well. Caregivers sometimes need help too. Being the one responsible has its own set of challenges. Often those challenges aren’t unique to this community. Because of our diverse communities, we can […]

  • Your LivingWithAddisons.org community URL has changed
    by ModSupport on August 13, 2021

    Hello members of LlivingWithAddisons.org When you go to your Addison’s community today, you may find yourself on the new landing page: Simply click on COMMUNITY, in red, top right quadrant, and you’ll be back on the home page where you thought you were going. Its address is https://forum.livingwithaddisons.org/ and you should bookmark that. Thanks for your patience as we made this important […]

  • Symptoms
    by ModSupport on August 13, 2021

    Addison’s disease symptoms usually develop slowly, often over several months, and may include: Extreme fatigue Weight loss and decreased appetite Darkening of your skin (hyperpigmentation) Low blood pressure, even fainting Salt craving Low blood sugar (hypoglycemia) Nausea, diarrhea or vomiting Abdominal pain Muscle or joint pains Irritability Depression Body hair loss or sexual dysfunction in […]

  • Treatment
    by ModSupport on August 13, 2021

    The most common treatment for Addison’s disease involves hormone replacement therapy to correct the levels of steroid hormones your body isn’t producing. Some options for treatment include: Oral corticosteroids. Hydrocortisone (Cortef), prednisone or cortisone acetate may be used to replace cortisol. Your doctor may prescribe fludrocortisone to replace aldosterone. Corticosteroid […]

  • The Facts You Need To Know
    by ModSupport on August 13, 2021

    From: The NADF Addison’s Disease The Facts You Need To Know What is Addison’s Disease? Addison’s disease is a severe or total deficiency of the hormones made in the adrenal cortex, caused by its destruction. There are normally two adrenal glands, located one above each kidney. The adrenal glands are really two endocrine (ductless or hormone producing) glands in one. The inner part of the […]

  • What is the Difference Between Primary and Secondary Addison’s Disease
    by ModSupport on August 13, 2021

    Addison’s disease, also known as primary adrenal insufficiency and hypocortisolism, is a long-term endocrine disorder when adrenal glands steroid hormones. Symptoms generally come on slowly and may include abdominal pain, weakness, and weight loss. Darkening of the skin in certain areas may also occur. Under certain circumstances, an adrenal crisis may occur with low blood pressure, lower back […]

  • Did you know president Kennedy had Addison’s Disease
    by ModSupport on August 13, 2021

    From: The Atlantic The lifelong health problems of John F. Kennedy constitute one of the best-kept secrets of recent U.S. history—no surprise, because if the extent of those problems had been revealed while he was alive, his presidential ambitions would likely have been dashed. Kennedy, like so many of his predecessors, was more intent on winning the presidency than on revealing himself to the […]

  • Important: Your LivingWithAddisons URL has changed
    by ModSupport on August 10, 2021

    Dear members of LivingWithAddisons, Your LivingWithAddisons community address is now:https://forum.livingwithaddisons.org/ Please click on that and bookmark it, and we’ll see you there! Seenie from Admin ===== (catch up story follows) Not long ago, we explained about the new landing page which you’d be seeing soon. You can see the post at: Heads up! Happening soon General […]

  • Heads up! Happening soon
    by ModSupport on August 9, 2021

    One day soon, you will point your browser (or your DiscourseHub mobile app) in the direction of livingwithaddisons.org and there you’ll be … in a completely different place! Well, not completely different: the page on which you’ll find yourself will be the new landing page for this community. From there, you will simply have to click on “Community” and you’ll be on the old familiar […]

  • How is a Ben’s Friends Community Different from Social Media and other Support Sites?
    by Bens_Friends on July 14, 2021

    Are you wondering how a Ben’s Friends community is different from social media and other support sites? The Ben’s Friends community for this rare disease is interested in only one thing: you. You as a person, and you and your struggles as a patient. We’re not interested in knowing your name or where you live. We won’t even allow you to use your real name when you register for one of our […]